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As I sit here in this bookstore cafe on my scooter writing this column, I’m thinking about accessibility. More specifically, physical accessibility. If I couldn’t get to the counter to order my iced coffee, I don’t think there would be any article for you to read.

Physical accessibility isn’t something people usually think about until they have no choice. Businesses, big and small often boast about their company’s inclusion and access. While their hearts are in the right place, sometimes it’s not enough. So many stores and offices advertise ramps for wheelchair users and curb cuts to get them on the sidewalk in the first place. However, the accommodations usually stop there.

Read more about HCP resources for Friederich Ataxia

Living with Friedreich ataxia (FA) means you must think about physical accessibility everywhere you go. My scooter isn’t the biggest mobility device out there, but it still isn’t the easiest to maneuver sometimes. Before I make an appointment at a doctor’s office, I have to do my research. Is the building on the ground level? If so, does it have automatic doors? If not, is there an elevator and/or a ramp? Is the doorway wide enough for the scooter? Is there a small (but still there) lip that hinders my entrance?

I have to think about the inside of the building too. Can I approach the check-in desk, or is something blocking it? Is the waiting room big enough to scoot in? Is the table in the room itself able to be lowered? Is there room for my scooter if I have to transfer to the table?

I know that I’ve spread some awareness when I start spending more time with people, and they notice the little things. When I joined my sorority in college, it only took a few days for the girls to start paying attention to campus surroundings. When I first started dating my boyfriend, he began to catch on in a matter of weeks. Eventually, my friends will get annoyed about the lack of physical accessibility in public places. They’ll say something along the lines of “I’ve never thought about stuff like this before.” That’s because they’re lucky and have an able-bodied advantage.

FA guarantees the eventual permanent use of a wheelchair (or mobility scooter, in my case). I try my best to be as independent as I can, but I know when I have to ask for help. And asking for help usually comes when I’m shopping by myself. Nothing is more frustrating than a big-name store like Target or Walmart, where they have pretty much erased cashiers. Self-checkout is something I loathe, not because I expect others to do things for me, but because it’s extremely difficult for someone like me who struggles with core balance and motor skills. There’s not a low checkout counter anywhere for people who rely on wheelchairs to use to make things easier.

A few months ago, I went to my local Target to do some grocery shopping. Since I can’t push a cart and drive my scooter at the same time, I carry a big canvas bag on the base of my scooter to use as my personalized cart. I ended up getting a few plastic bags’ worth of groceries, so I thought it would be easier to have a real cashier check me out. As I approached the checkout area, I saw that wasn’t an option; I had no choice but to do self-checkout. It was a terrible experience. I struggled to reach the screen and swipe my card. I couldn’t even see what the keypad said when I had to enter my pin number. There was an employee standing watch over the area, but even though I called him over 3 times to ask for help and told him I was struggling, he didn’t help me. The only thing he did was pick up my debit card off the floor before walking away. I was so angry by that experience that I emailed management at the store, but they gave me a half-hearted apology and didn’t even ensure that the situation would even be brought to the team member’s attention.

There are a lot of situations like this that I find myself in. FA takes away the ease of things so basic for able-bodied people, like approaching a sink in a public bathroom (I always carry hand sanitizer) or getting into a car (I don’t have an accessible car, unfortunately). It’s really rare to enter a convenience store or a bank that has low counters that I can scoot right up to. If a place does have a low counter, chances are they won’t use it.

I’ve been at so many public places in line for something, and even though the low end of the counter isn’t being used, they still don’t offer to move. If I’m with someone, I let them do the talking because they can both see and actually reach over the counter.

FA has opened my eyes over the past 15 years. I’ve become hypervigilant anywhere I go, whether that be a doctor’s office, a hotel, a park, a friend’s house, or even a concert. Years ago, I started noticing what I call “able-bodied shortcuts,” which grant access to footpaths on hilly grass or over gravel terrain that my scooter can’t handle. Wheelchair users usually have to take an alternative route to get to their destination.

 FA is rare, but if you really take a look around, so is accessibility.